Young man with neurological disease fights to stay alive
From their first date, Steve and Hope Dezember knew they were made for each other. Steve lit candles, cooked a tasty meal and played romantic music in the background. On that day in early 2011, Hope just couldn't help falling head over heels for him. But during the course of the evening, something else about Steve also caught her attention: when he tried to open a wine bottle, his hands trembled and he momentarily lost control over them. It only lasted a few seconds, but it was obvious that the simple act of opening a bottle of wine had been difficult for him.
Steve had experienced similar episodes before. He had been to seven different doctors to find out what was causing the symptoms but had never received an answer. It was not until four months after their first date that Steve's condition was finally diagnosed. At just 28 years old, doctors discovered he suffered from a terminal disease for which there is no cure: amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. The causes of ALS are still unknown, but its effects are devastating: it attacks nerve cells in the spine, causing the patient to progressively lose the ability to speak, walk or even move. Suddenly, the future looked very dark for Steve.
Two days after receiving the diagnosis, he decided there was no time to lose. He took Hope out for a walk, and after reassuring her she was under to obligation to stay with him, Steve proposed. Her answer was, "I am not going anywhere." Just two months later they said "I do."
The young couple decided to make the most of the time they still had to travel together. In 2012, they visited different parts of the US in what seemed like a perfect honeymoon. But it couldn't last. In January 2013, Steve lost the ability to speak. In the following months he lost over 60 lbs and nearly died twice. Hope could only stand by and watch as her husband's condition deteriorated day by day. Not only could Steve not speak, his legs were paralyzed and he was confined to a wheelchair. Finally, traveling became impossible and the couple returned home.
Back in Georgia, things didn't improve for Steve. His appearance changed radically, he became alarmingly thin and no longer wanted to cut his hair or shave. "When I look at him, I think he is as handsome as ever. He is still gorgeous. He doesn't shave anymore, but I like it," Hope would look at him and say.
Currently, Steve can only leave his bed to sit in an electric wheelchair. ALS has paralysed his entire body, but it hasn't affected his mind. Luckily, technology is now so far advanced that it's possible for him to communicate through a computer, as well as surf the internet and pass away the time.
Hope has given up her job as a therapist to take care of her husband 24/7. Together they co-founded "Drive," a project that combines Steve's hobby with fundraising to pay for his mounting medical bills. Steve paints pictures and exchanges them for donations. But it's the way he paints that makes his work special and gives the project its name: he creates unique images using paint and the wheels of his wheelchair. You can see some of his paintings on the "Drive" website.
Steve's life isnt' easy, but he fights every day to stay alive in the hopes that a cure for ALS is found. The couple lives life to the fullest, and their favorite line "Hope for Steve" seems to sum it all up.